Petition: Opposing MEGA

[Chrisb]

Dr. David Smith, who has run a NHS clinic for over 25 years, warns: ”You should almost totally avoid using a computer or reading books.”

I am sure there must be many Dr David Smiths working for the NHS but could that by any chance be the David G Smith who was adviser to the MEA, before CS, until about 1990?

 

[batteredoldbook]

“Crawley believes that CFS is a biological illness and that online CBT can be used to alter the young person’s biology.”

A rather important point. Worthy of tweeting/sharing on media. Biology is no roadblock to using the BPS solution.
...
Even rigorous science will not be enough to dissuade this group and they have the blessings of official policy behind
....
This can't be said often enough--nobody disputes a biological aetiology. It's about what happens when the person doesn't (refuses in BPS terms) to get well.

Hard for BPS researchers to now claim they believe CFS is a biological illness having written:

"According to this model, the symptoms and disability
of CFS/ME are perpetuated predominantly by unhelpful
illness beliefs (fears) and coping behaviours (avoidance)."
-
Manual for Therapists - CBT for CFS/ME - PACE.
Burgess/Chalder.

Yes, UK BPS folk conceded CFS *might* have a biological trigger, but the whole point of the BPS "hit and run" analogy was to play right down the importance of investigating an *ongoing* biological cause.
--------------------
Too often we see "CBT" left undefined in BPS discussion. Blanket statements such as "CBT is safe" are wrong. The safety of CBT is dependent on the cognitions the specific therapy has been designed to challenge.

As to CBT having an effect on biology, well, yeah, but it doesn't necessarily follow that said effect will be beneficial.

--------------------

I am glad to see mention of PEM in FITNET and talk of the need for biological research within MEGA... the trouble is that I simply don't have confidence in these researchers. The reason? - Because they won't address the methodological flaws in pace.

 

[slysaint]

Crawley and presumably her training of medics is clearly in support of including those with General fatigue as having ME, presumably because she can say she cured them

Or maybe she's aiming for a new name: Crawleys Fatigue Syndrome?

 

[AndyPR]

Or maybe she's aiming for a new name: Crawleys Fatigue Syndrome?

You surely mean "Dame Crawleys Fatigue Syndrome", as she'll surely be rewarded for her valuable services to the advancement of medical science, especially her bravery in the face of unreasonable opposition. /s

 

[trishrhymes]

You surely mean "Dame Crawleys Fatigue Syndrome", as she'll surely be rewarded for her valuable services to the advancement of medical science, especially her bravery in the face of unreasonable opposition. /s

Baroness Crawley of La La Land...

Sorry, not a helpful comment. Couldn't resist.

I feel sick and my muscles feel like they are shaking with exhaustion, only they're not actually shaking 'cos they've run out of energy. (So of course it's all in my mind).

 

[AndyPR]

Getting the thread back on track the OMEGA petition now has 2343 supporters.

https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

 

[Jan]

Is anybody in contact with any overseas ME groups? It would help if they could also spread the word (and the petition), MEGA will have the power to affect countries everywhere and disrupt scientific research if it goes ahead.

 

[TiredSam]

One the one hand the 2,500 who signed the MEGA petition will be portrayed as an endorsement by ME patients, whilst on the other the 2,384 (so far) who signed OMEGA will be portrayed as a vociferous and militant minority. Fortunately for EC and the BPS crowd, the logic of their belief system permits this (as it also also allows them to define the same people as both ill and recovered), and the rest of the world doesn't seem to notice or care.

 

[Jo Best]

Over 2,400 signatures now - https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

I believe in peer-reviewed competitive access to research funding in place of public appeals based on weasel-words and obfuscation.

Morton Turner, Australia
15 hours ago

https://www.change.org/p/opposing-m...dence-in-mega-research-for-me-cfs/c/531944594

 

[Countrygirl]

We wish!
@Jo Best

I think you have added on an extra thousand.

 

[Jo Best]

@Countrygirl oops, thanks for noticing! Edited to correct now

 

[worldbackwards]

One the one hand the 2,500 who signed the MEGA petition will be portrayed as an endorsement by ME patients, whilst on the other the 2,384 (so far) who signed OMEGA will be portrayed as a vociferous and militant minority.

116 tho.

 

[snowathlete]

Note sure how much later the OMEGA petition started compared to the MEGA petition, but looks like the OMEGA petition is going to overtake the MEGA one in a shorter time. So clearly, cannot be the minority in any sense.

 

[AndyH]

Note sure how much later the OMEGA petition started compared to the MEGA petition, but looks like the OMEGA petition is going to overtake the MEGA one in a shorter time. So clearly, cannot be the minority in any sense.

MEGA was running for five weeks from 28th Sept. Omega started three weeks later on 19th October.

 

[AndyPR]

2427 supporters now.

https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

 

[Esther12]

2427 supporters now.

https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

2452 now... would be good to have it beat the MEGA petition.

 

[Jo Best]

New post by Invest in ME Research - http://www.investinme.org/IIME-Newslet-1611-01.shtml

 

[Snowdrop]

@Esther12

Opps, 2452. I had to look several times to be sure.

 

[Esther12]

@Esther12

Opps, 2452. I had to look several times to be sure.

Sorry for the misplaced excitement - edited now. Thank you.

 

[Snowdrop]

Esther, I understand the excitement entirely. Hopefully we'll get there.